• Symtoms: Confusion, anorexia, strange thoughts, angry outbursts, extreme weight loss, falling, weak, sleepinesss

    Asked by kos56 on Sunday, July 7, 2013

    Symtoms: Confusion, anorexia, strange thoughts, angry outbursts, extreme weight loss, falling, weak, sleepinesss

    Have you seen these symptoms in your loved ones and how do you handle? My husband is Stage IV and after nearly 3 months in hospital just came home for palliative care. He refused hospice. He has lost over 50 pounds, has all of above symptoms, and am wondering if other caregivers have experienced this, and if so, how to handle, and what it means in terms of how much longer he has. I am caring for him alone, and with all of this plus the dozen meds I have to give him, I am overwhelmed. The oncologists keep being hopeful, but the truth is the cancer has spread to lungs, shut down adrenal glands, to spine, pelvis, chest lymph nodes, and who knows where else. It is a battle to get him to eat and drink, so I do not see him getting strong enough to tolerate any chemo. Would appreciate hearing from anyone else who has been in similar situation. Many thanks.

    2 Answers from the Community

    • AlizaMLS's Avatar

      Dear kos56,

      I'm not sure if we've corresponded before, but excuse me if we have. I'm Aliza, a BC patient, and the site's unofficial Medical Librarian. I was a Stage I patient, but my late father had CLL for 6 years and died 4 years ago so I understand where you're at.

      One thing I can suggest to you that you may find helpful is for you to contact CancerCare. The Social Workers who work there are specially trained to deal with the highly specialized needs of Cancer patients and their Caregivers. You sound exhausted. You sound as if you really need a break. These folks will help you find ways to do so far better than I can. They are wonderful and caring to speak with. I cannot recommend them highly enough.

      Another thing I can suggest to you is that if you belong to a religious community, now is a great time to contact your clergyperson and have her/him pay a visit. All these folk are used to dealing with ill congregants (whether they are hospital chaplains or not) and sometimes congregations have "sunshine committees" who help out by taking folks out to appointments, shopping etc. during difficult times.

      You may also want to contact your husband's insurance company to see what he is entitled to as far as home health aides are concerned. It sounds like you're going to burn yourself out. I know from whence I speak. My fiance is a widower whose late wife had ALS (Lou Gehrig's disease) and he did everything himself (he has PTSD from that experience). He's also my caregiver, but fortunately, I'm into my 7th month cancer free, so it's a lot different this time. Don't be a martyr and do everything yourself. It's ok to let others help. If you have family-children, or your husband has siblings, by all means let others share in his care.

      If you can arrange for all these other things, one other thing I can mention for you is self-care. Very important. You need to do things for yourself. You are more than your husband's caregiver. You are you. You need to get out and do things for yourself. Go for a mani/pedi, go to the library (I'm a librarian, what would you expect?!...;)) Go shopping and to lunch with friends, join a monthly book group near home. If there's no book group and you like to read, go online to wwwdotgoodreadsdotcom (sorry I had to write it that way-if I wrote it normally, it would be redacted and you wouldn't see it). That's a fun site where you can track the books you've read, write your own reviews, read others' reviews, make virtual friends, occasionally enter contests to win books, join small genre bookgroups etc. You can also do this from the privacy of home.

      I know I'm not in your situation and my late father wasn't exactly either-he had just become so weakened from his chemo and endured so many bouts of pneumonia (as a secondary infection) and kept being routed from home to the hospital to the rehab center to home that finally he decided he wanted to die (enough was enough). None of us could blame him. He really stuck it out.

      I hope you find some of my suggestions helpful to you. Let me know if I can help you in any other way. I hope your husband is comfortable and I hope that you get the opportunity to get breaks for yourself. You deserve it!

      Warm Wishes,

      almost 8 years ago
    • ladyhawk's Avatar

      angry can take over at times! :(

      almost 8 years ago

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